Author Topic: free for another 6 months!  (Read 2422 times)

madison

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free for another 6 months!
« on: May 11, 2010, 04:47:19 pm »
hello everyone! i just wanted to let you all know the good news...i am soooo relieved. i went for my post gamma knife mri and appt. at penn today.  it looks like the tumor is the same size it was in november.i also have a meningioma that has been growing but that also looked about the same this time. i was very anxious about my results because i've been having some wonky headedness and a few vertigo episodes.i had my gk in feb. 2008. the tumor actually is bigger than when all this started but i'm hoping it will hold steady or shrink. i don't know if that's possible this far out but i always have hope. my hearing has declined slightly each time i've gone for my checkups. i almost have to laugh while taking the audiology test...the audiologist must get some kind of entertainment when i'm trying to guess those words!!!
i seem to go through periods of time where i feel normal and then i'll have a whole week of that "off" feeling and so on. is this par for the course?
well, at least i got my get out of jail free card today. i feel like i live in 6 month increments. i know i shouldn't but it's hard to plan ahead further than that.my doctor actually said i could wait a yr. for the next mri- this is very encouraging- call me a glutton for punishment-i told him i'd feel better doing a 6 mth. follow-up.
ok.. i'm rambling on now. just wanted to post the latest in my journey. thank you all for being there-can't imagine not having you ;)
Pennsylvania:female: 40 yrs. old
R ACOUSTIC NEUROMA;GAMMA KNIFE FEB. 2008
multiple meningiomas
scheduled for translab @ Thomas Jefferson in Phila. Pa. on 6/18/2012

CHD63

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Re: free for another 6 months!
« Reply #1 on: May 11, 2010, 04:58:48 pm »
madison .....

Hurray for the good report!  Always what we like to see.

It is not unusual with ANs to have periods of more and less wonkyheadedness.  In my case, it seems directly related to my fatigue and/or stress level.

Not having had radiation treatments, I do not have first-hand knowledge of that but others have commented on the up and down nature of the recovery time.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

mk

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Re: free for another 6 months!
« Reply #2 on: May 11, 2010, 06:09:33 pm »
Hi Madison,

excellent news for both the AN and the meningioma. Having a week off here and there is part of the whole package, but the good thing is that most of the time you are fine. Living in 6 month increments just about describes the feeling well.
Could you remind us what was the original versus the current size?

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Lizard

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Re: free for another 6 months!
« Reply #3 on: May 11, 2010, 08:29:19 pm »
Very happy for you!  This is great to see.
Positive results are so encouraging  :)
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

leapyrtwins

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Re: free for another 6 months!
« Reply #4 on: May 12, 2010, 06:03:10 am »
Good news, Madison  ;D

Thanks for the update,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: free for another 6 months!
« Reply #5 on: May 12, 2010, 03:21:48 pm »
Hi, Madison ~

Congratulations - and thanks for the cheery MRI update!  It's O.K. to ramble...I do it here all the time.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

kenneth_k

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Re: free for another 6 months!
« Reply #6 on: May 13, 2010, 12:56:29 am »
Hi Madison.

Glad to hear the MRI went fine.
I believe your description of symptoms is just right for some people. And some people a facing an entirely different experience.

That's why posting is so valuable to us. There always be someone who can benefit or just want's to offer sympatathy/congratulations.

Best regards, Kenneth